It is not difficult for any of us adhesion-sufferers to know what Dylan is going through; because each one of us is very familiar with how Adhesion Related Disorder (ARD) has affected our lives and the lives of our families!!
But for Dylan to be suffering from the symptoms of ARD since the age of 11 months, has to be totally unfair!! What most of us adults ARE having a very difficult time dealing with, this little boy has had to endure as a baby...and still is dealing with at age three!!
In one of her messages Jess said: "When Dylan was born the doctors couldn't diagnose what was wrong." At 11 months he became dehydrated--and "a specialist spotted" that Dylan had a rare congenital disorder, known as Hirschsprungs disease
Chronic constipation is the classic symptom of Hirschsprungs disease. This can cause an intestinal obstruction, which may then lead to abdominal distention, vomiting, poor feeding, and poor weight gain.
Treatment of Hirschsprung's disease is by surgical repair. First, Dylan's surgeon had to create a colostomy--a surgical creation of an artificial anus on the abdominal wall by incising the colon and bringing it out to the surface. Next the surgeon had to remove "a large part of Dylan's intestines as well as part of his bowel"...and then connect the healthy parts back together.
Jessica said her little brother..." has had at least a dozen major surgeries and at least two dozen minor surgeries since he was 11 months old!!!!!!!!!!!" Even though Dylan is only 3 years old, he was not only born with this genetic disease; but--as a direct result of the many surgeries he's had since he was 11 months old, Dylan has also been suffering with adhesions.
All of Dylan's symptoms--and the many surgeries Dylan has had--ALL are related to the number one cause of Adhesion Related Disorder....SURGERY!!!
Jessica's own words: "We nearly lost him a couple of times, we're extremely lucky he held in there and is still with us; but now the adhesions are causing big problems for him. he's had about 30 surgerys since birth over a dozen of these were major surgery, he's been revived twice, been on a ventilator and life support more than twice and had collapsed lungs among a heap of other problems." A few days ago Jess said her little brother was put on TPN feedings--because he has become so terribly malnourished. I was told that TPN feedings are an indication that this little boy will probably die unless someone steps in and fixes that bowel so he can receive nutrition. In Dylan's case, we pray this is not too late; because two of the best surgeons in the world are ready and willing to evaluate Dylan's case; but they are unable to do anything...until Dylan's parents insist on a second opinion!!
Please let Jessica and her family know how much we really care about them--and that we, as adhesion-sufferers too, understand what they have gone through--and are going through right now--because we also are walking the same path as Dylan is.
It is so unfair that Hirschsprung's disease and post-surgical adhesions have prevented Dylan from enjoying his early child hood years--as all children should be able to. If anyone needs prayer bigtime, it is little Dylan and his family. .
In peace and friendship,
-- Helen Dynda (Hoffman, MN) ARD Patient Advocate Founding member of the International Adhesions Society